Monday, April 20, 2009

Oats, Barley .... and .... WHEAT!?!?

I was just reading back to the last time I talked about Matthew's health on here (see here) ... wow, that's a long time ago. I didn't realize I hadn't said anything for a that long of a period of time. But that's okay, because it would just have been complaining if I had. The good period that I talked about in the Decmeber post lasted for a whole months ... the longest we had ever seen Matthew do so well. We were getting quite confident by the end of the month that the fructose had been the problem and we had a cured boy ... we were wrong.

The month of January brought the "old/normal" Matthew back. A cold brought him down and he stayed down. For the next few months we seen ups and downs. We enjoyed the good times and prayed for the good times during the bad times. We were often perplexed how a child could have two such drastically different characters. The only thing we could see was that there was a relationship between food and the attitudes. When happy he ate well, when miserable he didn't eat. I gave up being too concerned about his eating habits. We tried our best to feed him, gave him options, bribed him with fruit (the only thing he likes) and let him snack throughout the day. We tried not to stress about it and let him decide when he wanted to eat and when not. We knew that if we couldn't get him to eat while bribing him with fruit we might as well give up because there was no way he was going to eat. The other thing that perplexed us greatly was that he gained no weight during the month that he ate like crazy .. or the next couple months. For three months his weight stayed the same, then suddenly one week he packs on 12oz (without eating a whole lot) ... only to lose it again a week later from another illness :( When he's eating fine I don't care how much he weighs or where he stands on the charts, but when he's not eating good it starts to get to me that I'll never get the kid to gain weight and stay on track.

At the same time we also dealt with a very bloated tummy almost all the time. We couldn't seem to track the cause of this, or even see a relationship in the size of his tummy to how he was acting ... it just left us wondering. We took him off of soy milk for a period of time and ta-da, bloated tummy gone ... for about 4 days ... and suddenly reappears, just not as bad. So frustrating. Then he became sick and refused to touch any food at all. On top of his lack of oral eating he started decreasing the amount he was drinking. We had him on rice milk and after one week of not touching solids and not drinking well we had no choice but to put him back on soy formula so he could get better nutrition and most importantly protein and more fat. We watched his belly, but it never got as bloated as it used to be ... who knows what the cause was, we don't!! So he remains on his soy formula which is mixed with rice milk to lower the sugar content but still give as much nutrients as necessary.

Thankfully since the beginning of April Matthew has been doing good. I haven't had him weighed for a month now and I'm really not concerned what the scale says anymore. I just want to see him eating well consistently and right now I'm happy with his eating. I would say he has mostly normal toddler ups and downs. He won't necessarily eat every meal or when you want him to, but when he's ready he eats decently. I read somewhere that for toddlers we should look at the weekly intake instead of the daily intake as toddlers don't eat consistently. I like this way of approaching it. There are many days I'd have to be concerned because his nutrition isn't balanced if I look at it daily ... but on a weekly evaluation I'd say he's doing pretty good. He's not a big eater but he's eating and that's all the counts right now. We thoroughly enjoy these times but try not to get too overally excited as we know that he's gone this long before and then crashed, but there's always that hope in the back of our minds that maybe finally he's feeling better.

My hope that he's finally feeling better is greater increased by the fact that he seems to have a bit more tolerance to foods now too. I'm quite impressed with the variety of fruit that he can now handle, although this is offset by the fact that he continues to have issues with vegetables. Seeing that his tolerance was better, the bloating was less, and his stools were doing good we waited for a good/happy stretch and as soon as he seemed to have set into a good stretch we decided to take the plunge and introduce him to gluten so that once and for all we could know whether he's gluten intolerance or has Celiac Disease. We started with oats (which technically doesn't have gluten, but due to cross contamination is avoided by those who cannot have gluten) ... all went well. Next we moved on to barley and were overjoyed that he had absolutely no issues with this ... yah, we are NOT dealing with a gluten intolerance!!

Todays challenge was the big challenge ... wheat! We now know he's not gluten intolerance, but he could still be wheat intolerant. And if not wheat intolerance he could have issues with the fructans in the wheat (which basically would still mean he's wheat intolerant). Many who have Fructose Malabsorption (FM) cannot eat wheat because wheat has fructans (chain molecules of fructose) in it . Oddly though there are also those with FM who can handle wheat. The FM that Marietta, Rebecca and myself have is mild enough that wheat is not a factor at all. Even those who have more severe FM can sometimes still handle the foods with fructans. So it will be a bit of test to gage if Matthew can tolerate wheat and how much. We will start by giving one serving of wheat every 3 days and see how it goes. Todays serving did not result in any instant (diarrhea like he gets from some veggies) or obvious reactions, so once again we're encouraged. This challenge will take much longer then the oats and barley challenges, but we're excited just to have had a stable child long enough to be able to challenge him.

I am truly hoping that Matthew one of those kids that manages to outgrow his allergies/intolerance by the age of 2-3. Previously it seemed that many foods we would introduce caused him to react - although not drastically, enough for us to notice. But lately he's passed each challenge we've given him. I keep dreaming of the day that we won't have a "special diet" food cupboard anymore ... and then I remind myself not to get too far ahead of things and just enjoy them as they are now, and regardless to be thankful that it appears that most of the issues Matthew had were likely related to his body struggling against various intolerances.

At the beginning of April I began to go to the chiropractor for my headaches, jaw, neck and shoulder pains. Matthew would trudge along with me and entertain everyone there. It came up once that I had to do baking to restock Matthew's supply ... which brought up Matthew's diet ... and lead to the chiropractor wanting to check out Matthew and saying that he could help him. So here we are almost three weeks since Matthew's initial visit ... coincidence that he's doing better?? The chiropractor that we are seeing isn't just the regular bone-cracker. He uses a special table so that when he adjusts you don't even feel it. He also uses applied kinesiology (muscle testing) to determine what needs adjusting or attention. The method used for this is similar to the hollistic allergist we took the kids to before (see here). It all leaves me rather skeptical. It's probably because it's just a foreign concept that I just can't wrap my head around. But yet many of these work with the same concepts as chinese "medicines" (acupunture etc) and there is much positive that can been see in the world of chinese medicines. Each time we see the chiropractor he asks how Matthew is doing and he seems more confident that he has cured Matthew. Regardless at this time Matthew is doing fine ... whether coincidence or not doesn't really matter, we're just happy to have a happy boy.

Our energetic little boy who can't sit still for more then two seconds is actually very cooperative each visit and loves going for a "ride" on the table (the table goes upright so that a person does not have to climb on it but can just step on and then be lowered). On the first picture you can see how he is using the applied kinesiology. Matthew's small intestines are often weak and so he applies pressure to them and a spot on his head (this is the "power source" that is used to reenergize the problem area). See how one can be a bit skeptical??

Candy Time
The poor deprived boy went so long without sugar that now he craves it something awful. We are learning quickly not to leave a purse laying around (now that he knows how to open zippers) or any candies out as he will try to inhale them. Thankfully there are a few candies that he is allowed to have (Rockets and Nerds) and as soon as the girls have a candy he is pointing and asking for his. I will put them in a bowl and he will plunk himself down on the floor whereever he was standing that that moment and wait for me to give him his bowl.

Reading with his sisters
. He still loves to read, although his attention span is short. He also loves glasses ... just has a bit of hard time getting them on properly

I finally had to pack away this toy as Matthew would drag it all over the house to use it as a stool ... this is how he managed to get ahold of candies, as well as other foods that he shouldn't be eating if we weren't looking ... makes it hard for me to know what he's reacting to when I don't know what he's eating ... thankfully I usually caught him on time.

Some time ago Matthew became obssess with Thomas the Tank Engine books. We would read them many times a day to him. We never introduced them to him, he found them himself on the girls shelf and would bring them to us. When we realized he'd become attached to these stories we gave him his Thomas train (he got it for his birthday but we never gave it to him because we figured he wouldn't appreciate it at that age). Well Thomas and the no-name car we gave him went everywhere with him for a few weeks. It is neat and precious to see his attachment to this toy and reminds us of James and his Leon's truck. A few days ago I decided he was ready for a new thrill and gave him Annie and Clarabel (Thomas's coaches) to go with Thomas. Thomas was forgotten for a day or so as he dragged Annie and Clarabel everywhere, but now he plays with all of them together.
One of Matthew's favourite places (besides the train track) to play with Thomas was on the change table. He would climb up on the table himself and ride Thomas around the edge of the table. It was neat that this is the first place he headed to with Annie and Clarabel.


Anonymous said...

WOW Steph! Just catching up! Haven't read for awhile....yes I probably should be doing something more productive :-)
You have been through a lot of changes... Is the Chiro still working?
Talk to you soon!

amymom24 said...

Wow, I NEVER would have thought to bring him to a chiropractor. Oh well, don't mess with it if it's working, right?? How is it working for you? Managing your pain and pressure well?